Common Misconceptions About Thyroid Eye Disease

Thyroid Eye Disease (TED) is most commonly associated with hyperthyroidism (overactive thyroid) from Graves’ disease but can also occur with overactive, underactive or even normal thyroids (2). The associated inflammation causes swelling of the tissues behind the eye, leading to symptoms like bulging eyes (proptosis), dryness, redness, light sensitivity, and double vision (diplopia).

Unfortunately, many myths and misconceptions persist when dealing with TED and these can delay diagnosis, block optimal treatment, or cause unnecessary worry. Having a proper understanding of the disease and its underlying causes are important to get the right care, avoid confusion, and ensure early and prompt intervention. Here, we will go over some of the most common misunderstandings, followed by what the research really shows and what is true and what is not.

Myth #1: TED is just another name for Graves’ Disease

• Reality: Even though they are closely related, Thyroid Eye Disease is not synonymous with or the same as Graves’ Disease (3). The latter is an autoimmune thyroid disorder when the body’s immune system attacks the thyroid gland. TED is an inflammatory autoimmune condition of the orbit and eye‐tissues that can (but does not always) occur in conjunction with Grave’s Disease.
• Why it matters: Assuming they are identical may cause delays in the evaluation or even mistreatment of the eye component.
• Supporting evidence: A patient‐knowledge study found that 60% of Thyroid Eye Disease patients and 50% of Graves’ Disease were unaware that TED may develop in the absence of overt hyperthyroidism.
• co: Upon developing thyroid disease or symptoms around the eyes it is important to separately evaluate for Thyroid Eye Disease as normal thyroid hormone levels alone do not rule out TED.

Myth #2: Only obvious bulging eyes (proptosis) are a sure sign of TED

• Reality: While bulging eyes (proptosis) are one of the more visible features of TED, it presents in many ways, including eyelid retraction, redness, tearing, double vision, and dry/gritty eye sensations. So not every patient will present with dramatic outward bulging.
• Why it matters: Reliance on proptosis as the only sign may lead to missing early or mild cases.
• Supporting evidence: Several studies have highlighted the overreliance of proptosis alone as the reason for the delay in seeking medical attention and the detection of TED
• Takeaway: It is important to be aware of the other symptoms stated above, especially in early stages of TED, as proptosis may or may not develop even with active TED.

Myth #3: TED only happens when the thyroid is overactive (hyperthyroid)

• Reality: While TED is most commonly associated with hyperthyroidism, it can also occur in the context of normal thyroid function (euthyroid) or even in an underactive thyroid (hypothyroid) gland.
• Why it matters: In the background of thyroid tests that are euthyroid or hypothyroid, it is important to pay attention to the symptoms of TED to rule out or affirm its involvement.
• Supporting evidence: A study by Edmunds et al. found that many patients with Graves’ disease, including those with TED, did not fully understand that TED may develop in the absence of hyperthyroidism (2).
• Takeaway: Thyroid hormone levels alone are not enough to exclude TED risk and symptomatic assessment of the eyes are also to be performed alongside.

Myth #4: TED will automatically get better with thyroid treatments

• Reality: Treating the thyroid disorder (for example with antithyroid drugs, surgery or radioiodine) is critically important but it does not guarantee automatic resolution of TED. Treatment of TED often requires dedicated eye‐care, multidisciplinary management, and sometimes specific therapies directed at the orbit.
• Why it matters: Patients may delay seeking eye care under the assumption that managing their thyroid condition will be sufficient.
• Supporting evidence: Studies show early eye specialist referral improves outcomes and delayed presentation is often due to the poor understanding of eye disease linkage.
• Takeaway: While good thyroid control is essential, it is important to keep your eye specialist in the loop and monitor TED signs even after resolution of thyroid-related issues.

Myth #5: TED is always very severe, and surgery is the only option

• Reality: TED varies widely in severity with many cases being mild and self‐limited, requiring only supportive care (artificial tears, orbital lubrication, smoking cessation) rather than surgery. Only a subset of patients develops “moderate to severe” disease requiring surgical or other advanced interventions.
• Why it matters: Derailing thoughts along the line of “if I have TED, I am doomed to harsh treatment” only create anxiety or deter patients from seeking care early.
• Supporting evidence: Studies estimate only around 3-5% of Graves’ patients develop severe ophthalmopathy which necessitates surgery.
• Takeaway: Early detection and tailored treatment may prevent progression. If you are diagnosed with TED, it is important to have a discussion with your care team about the full spectrum of outcomes.

Myth #6: Lifestyle choices do not influence TED outcome

• Reality: Lifestyle factors, especially smoking, have a major impact on the risk, severity, and treatment response of TED 4. Smoking is one of the most clearly modifiable risk factors in TED and is also known to affect treatment outcomes
• Why it matters: Ignoring the influence lifestyle factors such as smoking have on TED may discourage patients from making beneficial changes that improve outcomes.
• Supporting evidence: Many studies show smokers have higher risk of developing TED, more severe disease, and poorer response to therapy.
• Takeaway: If you have thyroid disease (or TED), quitting smoking is one of the single most important steps you can take to both optimize your eye health and ensure response to treatment.

Myth #7: TED only affects middle-aged women

• Reality: While TED is more common in women, it can affect men and people of all ages, including younger adults and, less commonly, older individuals. Moreover, men tend to have more severe disease when they develop it.
• Why it matters: The misconception that being male or of younger age prevents one from developing TED may delay diagnosis.
• Supporting evidence: Men also develop TED and may present with more aggressive disease.
• Takeaway: Regardless of age or gender, if you have either thyroid disease or are experiencing new eye symptoms do not ignore them 5.

Why Misconceptions Persist

Most of these myths stem from outdated textbooks or incomplete patient education as TED is relatively uncommon, hence many general practitioners, endocrinologists, and patients have low awareness. Eye symptoms often develop separately from fluctuations in thyroid hormone levels and may not have a direct correlation, making the link less obvious. There is also a lack of acceptance of the risks posed by lifestyle choices such as smoking.

How You Can Avoid Being Misled

• Be proactive: If you have thyroid disease, it is important to ask about your eyes and also get them checked at each follow-up for any changes in vision such as double vision, eyelid appearance, or surface dryness.
• Get evaluated early: A referral to an oculoplastic orbit specialist or endocrinologist/ophthalmologist who is experienced in TED can make a difference in early detection and treatment outcomes.
• Control risk factors: Lifestyle changes such as smoking cessation and early recognition of eye signs.
• Educate yourself: Understanding that TED is an autoimmune condition helps advocate for better care.
• Monitor for change: Stay alert for new symptoms of eyelid retraction, double vision or worsening dryness, especially when diagnosed with thyroid issues.

Get Clarity and Care for Your Thyroid Eye Health

Living with thyroid disease can feel complicated, and the addition of thyroid eye disease (TED) can create further confusion due to common myths and misconceptions. As research and patient education improve, more people are being diagnosed early, offered tailored treatments, and avoiding more aggressive interventions. If you are experiencing eye-related symptoms, do not hesitate to schedule an appointment with Dr. Raymond Douglas.

References

1. Shah SS, Patel BC. Thyroid Eye Disease. StatPearls. Treasure Island (FL)2025.
2. Edmunds MR, Boelaert K. Knowledge of Thyroid Eye Disease in Graves’ Disease Patients With and Without Orbitopathy. Thyroid. 2019;29(4):557-62. Epub 20190322. doi: 10.1089/thy.2018.0665. PubMed PMID: 30688164.
3. Wiersinga WM, Eckstein AK, Zarkovic M. Thyroid eye disease (Graves’ orbitopathy): clinical presentation, epidemiology, pathogenesis, and management. Lancet Diabetes Endocrinol. 2025;13(7):600-14. Epub 20250502. doi: 10.1016/S2213-8587(25)00066-X. PubMed PMID: 40324443.
4. Thornton J, Kelly SP, Harrison RA, Edwards R. Cigarette smoking and thyroid eye disease: a systematic review. Eye (Lond). 2007;21(9):1135-45. Epub 20060915. doi: 10.1038/sj.eye.6702603. PubMed PMID: 16980921.
5. Yang M, He W. Age and gender influence on clinical manifestations of thyroid-associated ophthalmopathy: a case series of 2479 Chinese patients. Front Endocrinol (Lausanne). 2024;15:1434155. Epub 20241003. doi: 10.3389/fendo.2024.1434155. PubMed PMID: 39421533; PMCID: PMC11483995.